Waiting, Round 2
I just received a copy of the final pathology report from Dr. Elmacken and while it is full of medical jargon and a ton of acronyms, the pathologist (from what I can tell) seems pretty confident that this is inflammatory myofibroblastic tumor.
Ana got her first dose of the steroid tonight (apparently it’s not prednisone) and she called me from Jim’s cell phone (a first since she’s been hospitalized) in an extremely chatty mood. She asked me about my own experience with Prednisone (I had shingles a few years ago and had to take it), and I said I remembered being kind of hungry and irritable and wide awake. I’m really glad that I had this shared experience with her, although just a small thing. It seemed to cheer her up.
I hope Ana can sleep tonight! I think her spirits have been lifted by this diagnosis because it’s not quite cancer, although (again) we haven’t actually been told it’s not malignant, just that it’s a low grade tumor that hasn’t spread.
So now we start the second round of waiting, this time for 1) Ana to get put on the donor list and 2) a viable liver. Initially we were told that the steroid would potentially shrink the tumor, but the liver specialist said it’s mainly to keep it from growing. I sent Doctors Hochberg and Elmacken an email asking what we could expect. Either way I hope it keeps Ana as comfortable as possible as we begin this new phase of waiting.
Ugh! The waiting!! I can’t believe it’s been nearly a month that she has been in the hospital. I really thought I’d be able to work a little bit, but my concentration is shot. I keep sitting down to work and ending up on the phone with insurance people, or hospital people, or Jim…(when I’m not at the hospital).
When I am at the hospital, I am so utterly, completely focused on Ana – her needs, her emotions, her comfort – that it’s a joke to get anything resembling work done. Each day feels like an odd kind of limbo…floating…ungrounded… the only other time I’ve experienced anything close to this was when Ana was first born and my nights were days, my days nights – it was six weeks of trying to live by a newborn’s rules.
UPDATE: Dr. Elmacken just emailed me and confirmed that the tumor is malignant, though still low grade (it was in response to an email I just sent her asking if the tumor was definitely benign).